Fear is a constant companion of most people living with a diagnosis of dementia. I’ve been thinking a lot lately about fear and dementia, and its impact when a person is diagnosed with dementia, or living with the symptoms of dementia. In the article Fear drives shadowing of Alzheimer’s caregivers written by Angela Lunde, it talks about fear being a cause of shadowing; “Shadowing is when the person with dementia attempts to keep his or her caregiver in their sight at all times, following them like a small child would his or her parent”. My dear father in law did this for at least a couple of years before he was diagnosed, and then almost frenetically in the last two years of his life, and it did used to drive me nuts! I really wish I had read about shadowing back then 😦

Angela Lunde says, “I believe shadowing represents the message of uncertainty, insecurity or fear.”Where am I? What am I doing here? What am I suppose to do? Where am I supposed to go? Do I know you?” Consequently, caregivers represent a lifeline, security, a protector, and an anchor to oneself.” This makes so much sense to me, especially now as when we are out in a crowd, or an unfamiliar place, I tend to need to have my husband or friends close by, and feel very uncomfortable when I am left to my own devices. This was not usual for me, as I was a very sociable person, and loved being with strangers. Perhaps this is the beginning of shadowing? When we used to take my father in law out, he needed to be very close by, all the time.

We went to an engagement party last night for our niece, the eldest daughter of my husband’s brother. It was quite challenging being amongst a lot of strangers, and coping with the noise, and I turned into a pumpkin long before midnight.  One person there would not stop talking about my father in law, and I was not ready to talk/listen about him so much, nor hear the stories of his dementia repeatedly. It was sad for him being talked about like that so candidly and confronting for us to listen to what might be ahead. Fear raised its ugly head, and kept me wandering away from this particular group to get away from the conversations, but then needing to go back to feel safe.

Writing about my fears, and the other feelings I have about living with a diagnosis of dementia, helps me work through them so I can get on with living. My own form of Narrative Therapy, with my blog community as my therapists!! It allows me to confront the negative feelings, and to find a more positive attitude. I am certain it helps to keep depression and anxiety away too. Yesterday a friend’s husband with younger onset dementia died. He had been living at home for almost 9 years, much longer than his original prognosis, but had been admitted to a Residential Aged Care Facility about three months ago, had spent a number of weeks in hospital, and was recently sent back to the RACF and moved into palliative care.  It is devastating for his family and our love and sympathy goes out to them.

Of course, these sad occasions serve as definite reminders of what we have to dread, pushing us to have to work harder to rise above our fears. There is no doubt fear can cause shadowing, as well as a host of other negative behaviours and feelings for the people diagnosed with dementia and the people who love them.